Forbes on Parkinson's

Monday August 18, 2014

http://www.forbes.com/sites/dandiamond/2014/08/15/why-parkinsons-disease-is-so-scary-no-cause-no-cure-but-its-not-a-killer/ - Robin Williams’ suicide on Tuesday was partly related to his diagnosis of Parkinson’s Disease, the actor’s wife revealed on Thursday.

“Robin’s sobriety was intact and he was brave as he struggled with his own battles of depression, anxiety as well as early stages of Parkinson’s Disease, which he was not yet ready to share publicly,” Susan Schneider said in a statement.

For Williams, knowing that his Parkinson’s would progressively get worse was “an additional fear and burden in his life,” a family friend told CNN.

What is Parkinson’s Disease?

About 1 million Americans suffer from Parkinson’s, a progressive neurological disorder that afflicts movement, balance, and speech. Famous patients-turned-advocates include Michael J. Fox, Janet Reno, and Muhammad Ali.

For Parkinson’s patients, the constellation of symptoms can vary widely. Tremors and vocal spasms are common; some sufferers even find themselves unable to walk through doors, feeling as though their feet are stuck to the ground.

And for a professional performer like Robin Williams, who built his career around physical comedy and rapid-fire patter, the looming symptoms may have been especially terrifying.

There’s no single test to detect for Parkinson’s, and no clear indication of what causes it in certain patients, although doctors technically understand what happens: Certain neurons malfunction and die off, leading the brain to stop producing dopamine that’s an essential chemical for regulating movement. Older men like Williams are at an elevated risk for the disease, but about 10% of patients suffer from young-onset Parkinson’s, which means they were diagnosed before they were 40 years-old.

Some researchers think there may be a genetic link that makes some people more susceptible to Parkinson’s, although that’s not been proven.

The disease is known to cause depression in as many 60% of patients — it’s the “most overlooked symptom” of having Parkinson’s, according to the Parkinson’s Disease Foundation. And that may have contributed to a “perfect storm” for Williams, given his pre-existing struggles with mental health, UCLA neurologist Jeff Bronstein told NBC News.

For example, former NBA star Brian Grant was afflicted with young onset’s Parkinson’s when he was just 36 years old. Grant’s since talked candidly about his dark thoughts after his diagnosis.

“I went through depression and a lot of wasted time [on] the couch just doing nothing,” Grant said in an interview in March. “Everyone wishes they could handle things differently and I wish I could’ve, but under the circumstances I was just happy to make it through alive.”

But five years after his Parkinson’s diagnosis, Grant has a different outlook.

“Just because you have a disease or come down with something like Parkinson’s, you can still live an excellent life,” Grant said last fall. “Life is good … I’m very happy right now.”

Why some Parkinson’s patients are hopeful

Advocates continue to chase a cure, hoping that new research into brain functions and stem cells will lead to a breakthrough. They’re also focused on helping patients carefully managing the disease, and a new smart watch from the Michael J. Fox Foundation may support that goal — the device is designed to automatically track Parkinson’s patients’ gait and movement.

In the meantime, Parkinson’s patients can rely on new and emerging treatments, like deep brain stimulation (pictured below) and complex drug regimens, to help slow down their symptoms. And as Grant alluded to, while the disease can be increasingly unpleasant, it almost never kills those afflicted with it.

Many people have preconceived notions about Parkinson’s that are “far more grim and dire than reality,” according to UCLA’s Bronstein.

“The majority of people with Parkinson’s are walking around without telling anyone,” he told NBC News. “You only see the small fraction who are not doing well. And people identify them with the disease.”

One of the more famous Parkinson’s patients is Michael Kinsley, a prominent journalist and commentator. Kinsley shocked the media world when he revealed in December 2001 that he had been diagnosed with Parkinson’s almost a decade earlier. (Almost 13 years later, he’s still pounding away.)

“If you’re going to get a serious disease … Parkinson’s is not your worst choice,” Kinsey wrote when he revealed his diagnosis. “It is progressive and, at the moment, incurable.”